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  1. Dyana

    Surgery experiences

    I had a temporary Illeostomy-it was manageable- bowel rest was needed and it reversed without too much difficulty. Good Luck.
  2. Dyana

    right ostomy bag help

    Agree Convateca - they will send samples to get the right fit.
  3. Dyana

    Sore Gums-

    I just had my second loading dose of ENTYVIO and for the last couple of days I have had large scabs on my head. I can scrape 1/6" pieces, no pimples- just scabs and now my gums are bright red- not bleeding, no ulcers but a little tender. I have gone through Humira, Cimzia and just stopped...
  4. Dyana

    Sore RED lower gums and large scabs on head only under hair

    I just had my second loading dose of ENTYVIO and for the last couple of days I have had large scabs on my head. I can scrape 1/6" pieces, no pimples- just scabs and now my gums are bright red- not bleeding, no ulcers but a little tender. I have gone through Humira, Cimzia and just stopped...
  5. Dyana

    Joint pain worse than the actual crohns?

    My joint pain started with Humira then I developed antibodies and was changed to Cimzia. Joint pain INCREASED- I only has Cimzia a very brief time and then to Remicade- a lot less joint pain with Remicade. I am starting Entyvio soon and hope the joint pain does not increase again. I've always...
  6. Dyana

    Red "fibres" when wiping

    my bowel movements are like dark brown sand or silt. any analysis?
  7. Dyana

    Pain management

    Mine will not either. My PCP will not either. I was referred to a pain management doctor. Same meds but another doctor to oversee and make sure not too much or at risk of addiction. just the way insurance is fighting the opiate problem.
  8. Dyana

    Stricture, Poor Diet, Healthy Ideas?

    I survive on tuna fish salad with mayo on crackers- no fruit or veg except cooked to wilting. TERRIBLE diet but it works.
  9. Dyana

    Home Remicade infusions- pros/cons/ your experience?

    I have been having home infusions for almost 2 years. They fit MY schedule. No waiting. extremely happy with the care AND my insurance PAYS ME $500 each infusion for saving THEM money.
  10. Dyana

    My Crohn's Jigsaw

    WOW- That took some TIME I don't know some of the terms used- sorry What is Banding 2012-2014 and BAM 2014
  11. Dyana

    Vulval Crohn’s Disease

    Wow, That's informative. Thank you for the information
  12. Dyana

    Advise please

    I had the SAME thing- from chow mein! never eat sprouts! Ride it out. pain meds if you must -That is what ER will give you after a CT scan and hold you at least overnight. takes a couple of BM's use miralax. Good luck
  13. Dyana

    Cramps question

    I have the same cramping problem. I call it a crohn's attack. about every 3 to 6+ weeks something will get "stuck" usually something I have eaten before with no issues. I have a partial blockage, appears to be from old scar issue and inflammation. GI surgeon would like to wait for surgery if...
  14. Dyana

    Combo therapy? (infliximab and azathioprine)

    I take both also. I also took the aza with humira and when I changed primary meds ( had anti bodies) continued with aza- so started remicade with aza at same time. on both about 2 years now. aza does not improve the remicade it just lowers the chances of anti-bodies being formed to the Remicade...
  15. Dyana

    Ostomate

    welcome! I think "incredibly warped sense of humour" is your best feature! I have nothing to offer you medically. 30 yrs Crohn's. Never your meds and temp ilistomy - reversed now. Good luck and someone with med info should answer soon.
  16. Dyana

    Overweight with Crohns?

    I am giant. always have been. Crohn's for 30 years. 4+ surgeries. Humira, cimzia now remicade. A typical but still crohn's. There are exceptions to every "rule". No case is the same.
  17. Dyana

    Need advice again.

    Yes, the nurse mixes the remicade and sets up the IV and monitors the entire time. Very relaxing.
  18. Dyana

    Need advice again.

    I had humira and cimzia through injections. Hated the "snap" of Humira- my hand would always jerk at the sound- My sister used to hold the wand to make sure It connected- I have heard they changed it since and you can get a type that does not SNAP now. Cimzia was fine- self injections and no...
  19. Dyana

    Stricture and post flare up help!!!!

    I have a narrowing and the surgeon wants to wait also. I have had 3 surgeries already so waiting as long as possible makes sense. When something gets stuck and the pain is incredible I take a tramadol and if that doesn't help I take a 5mg oxy and ride it out. Going to the ER is useless- they...
  20. Dyana

    I can’t cope with this.

    Some times you need help from the outside. have you looked into a support group that has meetings you could attend? some hospitals have such meetings. For Crohn's or other longterm conditions? Sometimes there are meeting for family of the person who has a longterm condition- somewhere your son...
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